Livvy’s 1st Seizure
While I wouldn’t normally write a blog about something like this, I felt it was almost my duty as an MLD parent to share our story. Even the upsetting or sad parts. Because MLD is so rare some doctors have never even heard of it. And oftentimes it’s the other MLD parents who I get…
Saving Jana
Every time I hear about another family with a newly diagnosed child with MLD I feel nauseous. The same feeling I felt for literally months after receiving Livvy and Keira’s diagnoses. And this week I learned about Jana Tourjee, a 6-year old vivacious little girl from New Jersey who was diagnosed with the juvenile form…
Goodbye Sherlock
Saying goodbye to someone we love is never easy. Whether it’s expected, in the case of a terminal illness like MLD, or unexpected, as was the case with our dear 7-year old French bulldog Sherlock this past week. After a week and a half of on/off appetite, throwing up and being generally lethargic some days,…
Happy 1st Re-Birthday Keira!
Yesterday, October 2, 2021 was Keira’s 1st “re-birthday”, one year from the date that she received her renewed stem cells that would allow her to live a normal life. It is beyond surreal to say that our almost-2-year-old is a 1-year survivor of MLD, of all things! And it is even more surreal that she…
Keira’s 1-Year Post Gene Therapy Check Up
I absolutely cannot believe it has been (almost) one year since Keira received her life-saving gene therapy treatment in Italy (her official re-birthday date is October 2, 2020). Our time in Milan seems like a lifetime ago. Yet here we sit at Phoenix Children’s Hospital for her 1-year post gene therapy check up! And I…
Being Apart
This weekend, we have the honor of attending one our best friend’s wedding in Montana. While Dave (the Best Man), and Eva (the flower girl) have been there since Thursday for the rehearsal, I am heading out today (Saturday) so that we only leave the other girls (Livvy specifically as she is the most medically…
When Kindness & Compassion Make History
Today, we helped make history. Albeit, a small part. But it will save the life of a girl diagnosed with MLD. And to me, that is everything. Just days ago I was informed of a 4-year-old girl from Alabama who was diagnosed with the juvenile form of Metachromatic Leukodystrophy (MLD) – the same disease, but…
Enrolling in Hospice
Last week, we enrolled Livvy in Hospice of the Valley. Not because she is drastically and rapidly declining, but more so to have that support system in place for when she does and in order to have physicians come to her rather than putting her in her stroller and driving anywhere (she has always hated…
When Tragedy Results in Research
One part of our story that some people don’t know is that Dave and I both got genetic testing done prior to having kids. Not because we knew of any issues in either of our family; simply because my doctor was offering it and we figured why not? Better safe than sorry. 100+ rare diseases…
Loss of Timeline
When you become a parent it’s almost automatic to write down the dates of your children’s milestones. Rolling, sitting, walking, talking, running, etc. But when they have a terminal illness like MLD, you begin to avoid those dates because it generally means loss of milestones. Looking back at my notes, I did not put a…
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The Riley's Road to Italy 